Wednesday, December 23, 2009

Caseload Check-in

Just before Thanksgiving I was inundated with new patients. I thought I was going to go crazy! Since then, my caseload has dropped to an all-time low of 32. I've had a lot of patients come and go shortly after being admitted. It's strange but nice to be able to focus more time and attention on my regular patients. It's unusual for this time of year, to be sure, but maybe this is God's Christmas gift to me. When my caseload ratchets back up to normal levels, I'll have to remember this calm before the storm.

Merry Christmas everyone! And to all who are grieving or going through difficult times, may you be warmed by the loved ones around you and comforted by God's presence and love.

Thursday, December 17, 2009

It's official!

I just got the letter from ADEC today: I passed the test and am now an official thanatologist. I also have another set of initials after my name (CT). Hurrah!

Monday, December 14, 2009

Goal Work

The other day I took a patient and his wife to Africa. Or rather I took Africa to them. No longer able to travel, this patient particularly regretted never having been to Africa or getting to experience a safari. Thanks to the library, I found the DVD set "Untamed Africa" which allowed us to see the wildlife up close. I also rented 2 African music CDs to play during lunch. And then I cooked West African Chicken Stew and South African Malvapoeding, which were both big hits. Of course, this can't completely make up for an actual trip to Africa but I figure it's worth a glimpse. The patient and his wife really enjoyed themselves, which is what really matters. And I was literally in heaven during this visit: helping a patient meet a goal and cooking for others. I wanted to pinch myself. This is the kind of day I need to remember when burn out starts to creep in.

Thursday, December 10, 2009

Playing the Expert

Recently I've been asked for my professional opinion in personal settings. This morning a friend called and asked me to speak with her mom. Mrs. X's mom has been battling cancer and the MD just told them that the cancer is no longer responding to treatment. She may have just a few weeks to live. The family was to meet with their local hospice but Mrs. X was anxious and wanted to talk things through with me. Her mom wants to die in her home. While Mrs. X's dad is still living, he is not capable of caregiving so Mrs. X and her siblings would be filling that role. She wanted to know if she would be crazy for taking this on. We talked through the situation. I educated on the hospice benefit and how the staff will support the family. I was blunt in relaying the demands of caregiving but I also encouraged her regarding the gift of caregiving. I believe that caring for a loved one at the end of life (or really any point in their lifetime) may be one of the greatest gifts we can give them. One must be aware of their physical and emotional limitations before taking on this responsibility. There are also financial considerations, whether people are able to take time off from work, etc. I know that Mrs. X is up to the task and I was more than willing to talk through the logistics. She's a strong Christian and pointed to the blessings God has given them through this trial. Her mom's illness has allowed family to come in from all over the world to visit one last time and Mrs. X can point to so many ways God has been taking care of them. When I hung up the phone, Mrs. X felt more confident in her ability to take care of her mom and in utilizing hospice. She was appreciative of the information I could give her and I was glad to do it. Sometimes I wish that my expertise didn't meet people in their darkest hour. Last weekend I spent time talking to a friend whose mother died a month ago. We talked about facing the first holidays without her. I helped her problem solve Christmas and coping skills. I normalized her grief experience. She told me she has one other friend that gets how she's doing but most people in her life just want her to be happy again. It makes me cringe to think about! Again, I'm glad I can be there for her but wish it wasn't for this reason. My heart goes out to my friend and Mrs. X. I can't change their circumstances but I can be there for them. I just wonder: Why does it seem "easier" to help strangers?

Tuesday, November 24, 2009

Engage with Grace

Here's a great tool to use with patients or your loved ones to help them figure out their end-of-life wishes.

Engage With Grace is a movement aimed at having all of us understand and communicate our end-of-life wishes.

Their original mission- to get more and more people talking about their end of life wishes- hasn't changed. They thought they'd try something different this year: a bit of levity. The rest of this post has been copied from Engage With Grace.

"At the heart of Engage With Grace are five questions designed to get the conversation started. They're included at the end of this post. They're not easy questions, but they are important.

To help ease us into these tough questions, and in the spirit of the season, we thought we'd start with five parallel questions that ARE pretty easy to answer:

Silly? Maybe. But it underscores how having a template like this, just five questions in plain, simple language can deflate some of the complexity, formality and even misnomers that have sometimes surrounded the end-of-life discussion.

So with that, we've included the five questions from Engage With Grace below. Think about them, document them, share them.

Wishing you and yours a holiday that's fulfilling in all the right ways."

(To learn more please go to This post was written by Alexandra Drane and the Engage With Grace team. )

Saturday, November 21, 2009


Yesterday ended up being a looooooooong day. Hospice RN Deb called me at 10 am to let me know one of our patients was in crisis. She was not able to leave the family she was with at the moment but planned to get over to our patient ASAP. I left the patient I was with and hightailed it over there. The moment I walked in the room I could see the patient had had a change in condition. Still, I had no idea events would unfold the way they did. The daughter told me she was doing better now, she said she hadn't cried in a few days and it built up until she talked to Deb on the phone. Deb finally arrived and while she worked to get the patient more comfortable, I met privately with the daughter to offer support. She is about my age, taking care of her mother with next to no help from anyone else. The patient was getting weaker and it was becoming hard for the daughter to clean and reposition the patient by herself. I decided to clear my schedule for the afternoon to do whatever I could to help out, whether sitting with the patient while the daughter took a nap or just being present.

The long and short of it led to a discussion about respite placement. Medicare provides 5 day respite care at a long term care facility under the hospice benefit. We all know how much I hate setting these up but it seemed to be the best option here. The daughter did not want her mom to have long term placement but the 5 day break would allow her to rearrange some things at home (for instance moving her mom's DME downstairs) and have a break from her care. It would also help her figure out whether she could afford to hire a CG (very limited finances and they were already getting assistance from the county) or if another relative would step up to the plate. There's one LTCF that typically makes respite an easy process and it happened to be close by. I called the admissions director and they said they did have respite beds available. I had the information faxed over at 1 pm and prepared to wait. Usually you hear back within an hour or two if the LTCF will accept a patient for respite.

In the meantime the patient had some other medical issues going on. The MD ordered a blood culture and an ABT was going to start. The RN had me call the admissions director to let her know about these new issues and what we were doing to resolve them. It was after 3 at this point; I felt I should have heard something by now. When I let the AD know this update, she asked me if I'd faxed the info over yet. I nearly had a heart attack! It turns out it was still in their fax machine and no one had brought it over to her nor had she gone looking for it, even though I stressed that this respite needed to happen fast. This was mind boggling! She said she'd go review it with the DON right away and get back to me. She called back a half hour later with some questions which I clarified. Then she called back 10 minutes after that saying they needed info on the Pleurex catheter even though the hospice RN would provide care and it didn't need to be drained for another week, which would not happen during the respite. At this point I was beside myself- it was almost 4 on a Friday afternoon, time was running out. I asked her if this was going to happen or not. She wouldn't give me a straight answer but noted that it was close to the end of Friday the weekend before a holiday. I had the office fax over the Pleurex catheter info and my supervisor called over there at my request to review it. Finally at 5 pm we got the answer that they would not take the patient tonight or tomorrow (because they had a complicated patient being admitted) and would only say "maybe" for Monday. Basically we were screwed. The odds of finding an admissions director still working at this time who would be willing to work on a respite placement for tomorrow were very slim. Trying to arrange a respite on Saturday morning is near impossible (I managed to do it once but it took about 7 hours of work.)

We decided to talk plan B. The daughter didn't want the patient to go to the hospital for an in-patient admission. She thought she could get a relative to come over and help over the weekend. A hospice RN would visit Saturday and Sunday. We would try to arrange respite on Monday. However, the MD didn't think that was good enough and pushed for in-patient. When the daughter still refused, the MD demanded that I arrange respite...tonight. Um, hello? I've never been a fan of this MD- she may be great with patients but she micromanages other staff and bullies them- and we don't even work for her! Still, I called a couple of other places. One admission director was actually still there, miracle of miracles, but they didn't have any respite beds. Other places had no admission personnel available. It was 6 at this point and the patient had another change in condition with audible congestion. RN Deb was back at this point and it was determined that the patient was actively dying.

Gears switched again. The daughter was committed to caring for her mom to the end and in their home. Continuous care was arranged. The daughter had a friend come over to offer support. I left their house about 8 pm with everything in place. I commented to Deb that I hoped the patient wouldn't die tomorrow (really today, as I write this) as it's the daughter's birthday. She shared a story from working with another family. It was going to be a family member's birthday and she told them she hoped the patient wouldn't die that day because of it. The family surprised her by saying they hoped the patient would die on the same day. Apparently they are of a religion that believes that the day you die is a celebration (let me know if you know which religion this is.) To be able to share a birthday with someone's death day is very special to them. It's the idea of birth and rebirth. Such an interesting way to frame death. But I still hope this patient doesn't die on her daughter's birthday. Of course, it isn't up to me or the daughter. We'll have to wait and see.

Thursday, November 19, 2009

Why do I do it?

Whenever I tell someone what I do for a living, after the inevitable "I could never do that!", they often ask what led me to become a hospice social worker. Quite a few things have happened in my life to put me on this path. I give them a condensed version but you, lucky readers, will get the extended cut.

My maternal grandparents have 12 siblings each, creating a very large extended family. Unfortunately, this side of the family also has quite the health history, including just about every kind of cancer you can imagine. Consequently I've been to my share of funerals starting at a young age. In fact, my mom recently told me I was just a few months old when I went to my first funeral. I don't think I knew any of the deceased very well at that time. I would say the first time a relative died where I felt affected by the death was my great aunt Jean (not quite sure how old I was, probably between 8 and 10). Despite the sadness associated with funerals, I actually think it's great that I was exposed to death at such a young age. I was able to see grown-ups model healthy ways of expressing grief and also learn that death is a part of life. These are both lessons that children will learn at some point in life; it does not help to shelter them from those realities.

The first funeral I remember was for my great-grandmother when I was in first grade. The church and potluck after are hazy memories. What stands out to me is what happened after that. My mom took the potluck leftovers back to my grandparent's house to put away while my grandparents finished visiting with people. She, my brother, and I arrived only to find that the house was locked (they never locked their house as they live in a farm community and this was the mid1980s). It was a hot day. There were concerns of salmonella if the food didn't get into a refrigerator soon. My mom demonstrated her talent for breaking into houses, however, and spied a window in the garage. She drove the car next to the garage and then- cue music- hoisted me through the open window so I could open the garage door and let everyone in. I remember thinking how great it felt to help other people. (The funny part of this story is that after all that, the back door was also locked- this door was definitely never locked- so my mom ended up taking out the window air conditioning unit and pushed my brother through.) Mom told me when I was little and someone got hurt on the playground, I would always run over to them and try to help. She thought I would end being a nurse.

When I was in 5th grade, my brother's best friend M was diagnosed with brain cancer. They were in 3rd grade at the time. On bad days, M's mom would call and ask if I could play with M's younger sisters. While I provided distraction from the tragedy unfolding downstairs, M's parents could focus on his pain control and spend precious time with their dying son. M died later that year. It was also around this time that I discovered Lurlene McDaniel books. McDaniels writes books about children with terminal illnesses, sometimes they do not survive. Being there for M's family in my own way and then reading about people who worked with terminally ill children led to my interest in someday working with that population.

The next notable death was my great-uncle Carl when I was 14. He had brain cancer and stayed at my grandparent's house during his final months. My grandma was his caregiver and they did get hospice (although she told me later that the support they received while Aunt Teresa was on hospice in 2006-7 was above and beyond the hospice care that existed in 1994. I don't remember anything about Carl's hospice experience, but my family always called Grandma the original hospice caregiver. Grandma was always taking care of others and I'm sure this rubbed off on me too.) Uncle Carl was a strong Christian and this strongly influenced his attitude regarding cancer. This in turn impacted my own faith and got me back on the right track with God. As I got older, I naturally formed stronger relationships with my extended family and friends, a very positive thing. But this also meant I was exposing myself to more loss. Through it all, I continued to feel that it must serve a purpose.

Starting in high school, I realized that I was a gifted listener. Friends were always coming to me for advice- even on matters with which I had no personal experience. It seemed that I was destined to be a counselor. Only I decided that I would be an English teacher, thanks to my lifelong love of reading and writing. I even convinced my favorite English teacher to let me do an independent study with him. I developed 3 lesson plans for sophomores during the first semester of my senior year. Mr. H. even adopted one of my lesson plans into his curriculum! I chose my college based on its excellent reputation for secondary education.

Still, I couldn't shake my interest in psychology and cancer. I signed up for psychology and sociology classes. An assignment for my sociology class was to learn about a job in the field. Thanks to a connection, I learned about someone who was a social worker at Children's Memorial Hospital. I was absolutely entranced by the job description but I didn't change my major until the end of the year. My college didn't have a social work program so I became a sociology major with a social welfare concentration and a psychology minor. I briefly volunteered at a children's grief group until life circumstances intervened. While I still wanted to work with terminally ill children, I thought it was important to explore other areas of social work. I started working in residential care with teenage juvenile delinquents before my senior year of college. While I enjoyed developing relationships with the girls, it was exhausting work and reinforced my interest in health care social work.

Somehow I landed in an awesome MSW program for grad school. My first year fieldwork placement was at a county health department in their Family Planning and Prenatal Clinic programs. We had to interview for our second year fieldwork placements and while I looked into and interviewed at a couple of hospitals, I ended up at a hospice in the city. I found that hospice was a good place for me. By virtue of my background, I was already familiar with many types of terminal illness, I offered a calming presence and a listening ear, and I found myself able to advise people in their darkest hour. I found the purpose in having experienced past losses- I could finally help others with what I knew. I never envisioned myself in hospice, much less enjoying the work, but it seems like a perfect fit. I love hearing life stories, soaking up their wisdom. I even love the perspective that the crazy families offer: gratefulness for my wonderful family and network of friends.

I like to tell people that I did my fieldwork placement in hospice and never looked back but that's not entirely true. I'm still interested in working with terminally ill children and I'd like to do more bereavement work. What is true that I feel called to my job without a doubt. While I don't always understand what it is within me that connects with the ill and grieving, I strongly believe that God has gifted me to do this and that He gives me the strength to do it. I am grateful that my experience in hospice was helpful to my family while my great aunt Teresa and Grandma were under hospice care. As difficult as that time was, I believe that God placed me in my job for that very reason. I don't know exactly what the future will hold but it'll be interesting to find out.

Sir Arthur C. Clarke on his 90th birthday

"How does it feel to have completed 90 orbits around the sun?" Words of wisdom from one of the best known science fiction authors. (I should note, however, that I do not believe extraterrestrial life is out there. Still, there's no harm in Sir Arthur's wish.) Full transcript available here.

Tuesday, November 17, 2009

What do you do?

The age old question asked of all social workers. As one specializing in hospice, I have a "script" I fall back on to explain my job title. Of course, it's not all-inclusive. In fact, the longer I work in hospice, the more I realize how unorthodox my job can be at times.

For instance, I tell patients that I'm there to provide emotional support, which includes stress management, developing coping skills, and offering a listening ear, as well as normalizing their experience. I also assist with long-term care planning and linking people to community resources. I can guide them with funeral plans and help set up Advance Directives. I assess their need for a hospice volunteer and/or pet therapy. I facilitate life review, provide prebereavement counseling, and encourage self-care for the caregiver. I provide respite at times. I read to patients, play music, lead them through guided imagery exercises, and provide companionship. I help with goalsetting and improving quality of life. I tell families that my role is the most flexible and that if I don't know the answer to their question, I'll find someone who does. Mind you, most families get the condensed version of all this!

Of course, there are times that my role doesn't fit the social work stereotype. The hospice team roles can blur. I figure I am there to help even if I'm not the RN/chaplain/handyperson. I don't do anything above and beyond my own abilities and I keep ethics in the back of my mind. But if someone needs help, I'm going to do it. So here's an incomplete list of other things I've done over the years that don't quite fit in to my normal job description:
-Moved furniture (making room for the hospital bed or setting up a TV in the patient's new room)
-Held a patient's leg up while the RN changed a dressing on his gangrenous foot (this has ensured that I will never ignore a cut and I will always take the prescribed ABTs)
-My Bucket List patient (almost skydiving, going to Springfield, etc.)
-Helped families dress their loved one after death before the funeral home arrived
-Helped RNs reposition patients in bed
-Sung hymns with families at vigil
-Prayed with the patient at their request
-Discussed a patient's bowel regimen at length. I hope I never care that much about my own habits!
-Helped with computer tech issues for the technology-challeneged and typed correspondence for the visually impaired

Hope you enjoyed this behind-the-scenes look. Any examples of blurred lines in your respective professions?

Thursday, November 12, 2009

New Book

I learned about this book thanks to my monthly newsletter from Team in Training (from The Leukemia and Lymphoma Society.) A TNT participant's patient honoree is featured in Perseverance, which profiles 20 young adults who were diagnosed with childhood cancer. The book shares their life lessons and experiences. I plan to pick up my copy soon!

From the website:
"These honest, first-person accounts lend amazing depth to the inspiring stories of these young men and women. Inside, you'll meet Zac York, who tells of climbing Mount Whitney-on crutches-after battling brain cancer. You'll meet Alex Oden, who-just days after brain surgery-gave his 8th grade peers a graduation speech called "A Day Well Spent," in which he challenged them to make a difference in just one day. You'll meet Kristen Jones, who, while battling leukemia, was able to pass the MCAT and pursue her dream of becoming a pediatric oncologist.

Twenty unique and fascinating stories, with one common theme: perseverance. The stories of these heroes demonstrate how anyone can learn to live with energy and passion, regardless of the obstacles to be faced, and will remind us all that now is everything."

Tuesday, November 10, 2009

Mural Work

I came across a great example of instrumental grief just now. Instrumental grievers emphasize grief as "thinking your way through it." They tend to problem-solve and take action, for instance, running a marathon or building a memorial. The flipside of instrumental grief is intuitive grief. Intuitive grief emphasizes "being" over "doing." It is feelings-based. Originally, instrumental grief was seen as a more masculine response, while intuitive grief was the feminine response. However, it is healthiest to have a balance between the two. The following story is about a mural (memorializing) that honors a widow's husband.

Regina Holliday began creating a mural protesting the healthcare system 6 days after her husband Fred died. She and Fred both believed the system failed him in his fight against kidney cancer. "It's a wonderful therapy and relief to get to paint," said Holliday. "To get to do this has been a wonderful dialog with the public. I mean, people often come over here. They look at the mural. They want to talk about it and they often share their health stories."

The note in Fred's hand states "Go after them, Regina, Love, Fred." Symbolism in the mural includes a clock with no hands (normal time seems suspended in a health emergency), a nurse at a computer with the dark screen (records not shared with patients), and a doctor with her hands tied (miscommunication in the healthcare system). No matter what you may think about healthcare legislation, there is no denying Holliday's voice or her husband's story.

Holliday is done with memorializing for now as the weather turns cold but the article notes that she could take her paints out again in the spring. I think this mural is a powerful response to the loss of her husband but it's just one step on the grief journey. I wish her well.

Memory Screening

National Memory Screening Day, an Alzheimer's Foundation of America initiative, is a week from today on November 17. Qualified professionals offer free memory screenings across the country, as well as providing education and follow-up resources. A screening consists of a series of questions and/or tasks designed to test memory, language skills, thinking ability, and other intellectual functions. Screenings are recommended for anyone concerned about memory loss or dementia, whose family and friends have noticed changes in them, or has a family history of Alzheimer's disease or a related illness. You can also be screened if you would like to see how your memory is now and for future comparisons. Screenings are private; it will only be the testee and tester and the results are confidential. It should be noted that a memory screening does not replace consultation with a doctor, nor will it diagnose any illness. However, the results may point to the need for further testing and consultation. You can find a screening near you by clicking here.

Monday, November 09, 2009

Patient Round Up

A sampling of my recent patients:

A former high school football coach

An author being cared for by her 30 year old daughter (I try not to imagine myself in the same shoes)

A man who stood up the Mafia 40 years ago and still lives- though he wouldn't put it past them to come looking for him

A restaurant owner in the process of handing the reins over to his son

A spitfire of a woman who raised a family and worked her whole life, who refuses to believe that cancer will take her down in the end

A former cop who became an auction assistant after retiring. Hoarder that he was, he took home any unsold items...his family is having quite the task of clearing out his home

A structural engineer who designed some of the expressways in Chicago back in the day

I love listening to everyone's life stories and hope that my own history will be similarly rich someday.

Thursday, November 05, 2009

Baxter the Therapy Dog

Palliative Care Grounds 1.10 are up at Pallimed: Arts and Humanities. They kindly honored me with The Hard to Pick Just One Award. Thank you!

If you don't have time to peruse the post, at least watch this video about Baxter the Therapy Dog. The Medical Futility Blog found this kleenex-worthy story.

Baxter died October 16, 2009 at age 19. He is rightly described as the world's best, most devoted, and oldest therapy dog. He volunteered with San Diego Hospice for 7 years. Melissa Joseph, Baxter's mom, has written a book about this amazing dog, Moments with Baxter. If your hospice or palliative care program does not already have a pet therapy program, I would highly encourage you to consider it. Pets have an innate ability to touch a person's life. Joseph's website has information on therapy dogs or you can look at Therapy Dogs International. TDI explains the benefits for hospice patients this way: "The sight of our dogs and the touch of their fur often brings peace and joy to those patients whose life once included animals. Physical contact has a calming effect and dogs have the ability to bring back pleasant memories of a person's life. Therapy dogs help combat loneliness and they give people the chance to have something to look forward to. Exposure to our dogs allows the patient to feel needed and wanted at a time in their life when death is evident."

Wednesday, November 04, 2009

Notes Left Behind

I stumbled across the story of 6 year old Elena Desserich who died of brain cancer in 2007. After her death, her parents came across hundreds of notes left by Elena throughout the house, in between CD cases, dresser drawers, and so on. It is mind blowing to think of this little girl planting these notes, a final legacy. How did she decide to do this? How did she feel as she hid her notes, knowing they likely wouldn't be found until after her death? What a beautiful gift for the family! Her parents have now published a book Notes Left Behind. Proceeds from the book will benefit The Cure Starts Now, an organization dedicated to fighting pediatric brain cancer.

Below is the Today Show interview with the Desserich family.

Monday, November 02, 2009

Reading Rules

We took care of a CVA patient for about a year and then discharged her a year or so ago as she was medically stable. She just came back on to hospice last month. She is bedbound and mostly blind thanks to maccular degeneration, thus limiting how she spends her day. The hospice chaplain and I had taken turns reading the entire Chronicles of Narnia to her during her previous hospice admission. She really loved listening to the stories and I enjoyed rereading the books. In fact, I was disappointed whenever the chaplain had read to her because that meant I missed out on a chunk of the story myself! As I assessed her activity level and interests this time around, it was apparent she had not been read to in awhile, although she did have an audiobook to listen to. There was a stack of mass market paperbacks next to her bed so I told her what she had there and she picked the one she was interested in reading/hearing. She chose a book by JD Robb, who is apparently Nora Roberts' alterego. Nora Roberts has had many of her books adapted into Lifetime movies, if you're not familiar with her work.

It is an interesting process to read a book aloud. Sentences that make sense while you're reading to yourself sometimes sound awkward when read out loud, especially when it comes to what I like to call "fluff books." Fluff books are enjoyable to read but either lack depth or are poorly written with interesting plots. The book I'm reading to this patient is definitely a fluff book. It's a science fiction murder mystery and it's interesting. I try to properly pronounce the futuristic technology but she seems to appreciate even when I get it wrong.

I usually do not edit any book that I read to a patient, with one exception. I do not use the F-word. I think it's a waste of a word and generally something else will suffice. So when the F-word is used, I substitute it for something else. I don't feel bad about this because Robb/Roberts used the F-word in one sentence and then changed it up to "fricking" the next sentence. No big deal, right?

What about reading sex scenes to a patient? I should have known that there would be a sex scene where Nora Roberts is concerned. I'm reading along when the character's husband comes home from his business trip. They're very happy to see each other, if you know what I mean. As I continued to read, I was freaking out in my head. This is so awkward! Is this even appropriate to read to someone? Should I just skip a couple of pages? Maybe this patient likes the author because of the sex scenes- then I would be depriving her. In the end, I did read the sex scene, albeit as quickly as I could. And now I just hope that there won't be any more in this book!

So what do you think? Is a little editing OK here and there? Would you have read the sex scene to a patient?

Update: Before reading further to this patient, I asked her specifically if she wanted potential sex scenes to be read to her. She quickly answered "yes, please do!" And there we have it. From now on, if I'm reading a book selected by the patient, I will first ask them their preference regarding cursing, sex scenes, and violence.

Friday, October 30, 2009

Placing the Pall

I've been reading "Death & Dying, Life & Living" as I study for my upcoming Thanatology certification test. The book is a great overview and I would recommend it to anyone interested in end of life issues. I wanted to share a section that struck me in an unexpected way. The authors were defining the word palliative.

"Originally, "to palliate" meant "to cover with...a cloak" (Oxford English Dictionary, 1989, vol. 11, p.101). This meaning can be seen in the practice of covering the casket at a funeral with a cloth called a "pall.""

This is nothing new in itself but reading anew where the term "pall" comes from took me back two years. A few days after my great-aunt Teresa died, my grandparents were busy finalizing the funeral arrangements. I was at a track event from one of my youth group girls and I remember it being an unusually chilly Saturday for April. Somehow I had the foresight to turn the volume on my cell phone, as I typically keep it on meeting mode. I was sitting in the bleachers with my co-leader while we waited for the meet to begin. And then my grandma called me and asked if I would like to place the pall at Aunt Teresa's funeral. I was very honored to be asked. We chatted a little longer and then said we'd see each other the next day at the visitation. Until reading the above passage, I hadn't thought about that phone call since it happened. I realized it was the last time my grandma called me. She was diagnosed with stage III multiple myeloma a week after Teresa's funeral and died a month after that. I spent countless hours with her between that phone call and her final moments. But there's something about that phone call that is so precious to me, even though I couldn't tell you what else we talked about or how long the conversation was. She called with a special purpose. She called to thank me for the ways I helped throughout Teresa's time on hospice and the day she died. And she probably ensured that I wasn't driving while I talked on my cell phone- one of her biggest concerns, second only to whether or not I had a sweater or coat to keep me warm in cold temperatures. Ironically I remember little about placing the pall at Teresa's funeral. I might have handed it to the priest and then a few of us placed it on the casket. I do remember feeling odd about playing a part in a Catholic funeral since I and my immediate family are not Catholic. (Imagine how I felt when I and my cousins Clara and Emily carried the elements to the priest at Grandma's funeral! I can assure you we did not partake.) I haven't allowed myself to write much about my Grandma's death but lately I've been flooded with different memories. Maybe that means it's time to write now what I couldn't write then. My grandmother radiated love and I miss her. I am thankful to remember this forgotten moment.

Thursday, October 29, 2009

Pastor practices what he preaches

This video gives the background on Rev. Forrest Church. Church and Carl Lehmann-Haupt developed the idea for Church to examine what it is to live and minister in the face of cancer. Church decided to find out if the advice he had given all those years to others really worked and applied to his own life. He said: "Many people who are dying have an opportunity—but sometimes don't have the imagination to seize. And that is to turn my life…into a prayer, to embrace life, to accept my past and just say 'yes' to it. Not to let the future haunt me, but to be in the moment, aware of the miracle, which is life itself, which would not exist if death was not one of its hinges." Each week a new segment will be featured on AARP. The Prologue is below. Click here for Acceptance and here for Appreciation.

Wednesday, October 28, 2009

Doctors and Psychotropics for the Nursing Home Population

As promised, here's Part Two to the Tribune investigation regarding the use of psychotropic medications with the nursing home population. This section examines the lack of sanctions or discipline for doctors who wrongly prescribe psychotropics. It appears the nursing home gets the blame each and every time. And we know that the nursing home isn't taking matters into their own hands for all those instances. I have to say this investigation makes me more impressed with some of the LTCFs I visit on a regular basis. I always look at my patient's psych history and, from my recollection, the records have always been complete. The facility medical directors and doctors visit regularly and generally seem to provide quality care to the residents for the majority of LTCFs I go to. Yes, there are exceptions but the beauty of my expertise is that when a family decides to place their loved one at a LTCF, I can advise them on the MDs that visit the facility and help them make that decision.

Tuesday, October 27, 2009

Psychotropic Drugs and Indigent Funerals

If you haven't figured out by now, the Chicago Tribune is a fantastic newspaper and an integral part of my de-stressing routine. Their investigations and news stories never cease to impress me. Today was no exception. The latest Tribune Watchdog investigation regarding compromised care focused on Illinois nursing home residents who receive psychotropics they don't want or need. Part One: Drugged Without Cause ran today and tomorrow I'll post Part Two: Doctors' role in misuse of psychotropics. The article is heavy with incidences of nursing home residents who were given psychotropics without a doctor order, without giving consent, or without a medical or mental health need. I cringed a little bit when I read the headline, fearing that people will read the article and have a knee-jerk reaction. The truth is some people need psychotropics and should stay on them. Not every nursing home or nursing home employee makes such poor decisions, nor do all doctors needlessly order psychotropics. However, it is good for us to be aware that these situations happen and to work to ensure that they do not happen anymore. Medication should not be the first measure, as the article notes. Patients with certain behaviors, anxieties, fears, should be redirected, offered a snack (I get cranky when I'm hungry too!), or involved in an activity (boredom could make even a saint act out.) What bothers me is how employees and nursing homes rationalized such poor practice. Just read this particular example:

At VIP Manor near St. Louis in 2006, a woman with Alzheimer's cried and became extremely anxious when she had to urinate. She also repeatedly asked to go to the bathroom. Nurses responded by giving her injections of two antipsychotics, inspection reports state. When that didn't work, the woman was sent to a hospital for a psychiatric evaluation. The psychiatrist reported back that the woman had a urinary tract infection. VIP Manor's nursing director, whom the report did not identify, told state inspectors that her staff was still learning to look for medical issues before administering psychotropics.
"We aren't there yet, but close," she said.

As my blog's title states, I'm a social worker, not a nurse. But even I know from reading that if the patient cried and became extremely anxious when needing to urinate and requested to go to the bathroom repeatedly, it just might indicate a UTI. How on earth could they have missed that? Why would a psychotropic be the first response and why would it come before a psych eval? And why would medical health professionals need to be trained to look for medical issues before resorting to psychotropics? It just doesn't make sense. I look forward to reading Part Two tomorrow and hope that this investigation will lead to change.

Another interesting article concerned the rise in indigent burials, by 30%, in Chicago this past year. Indigents are buried in Homewood Memorial Gardens, if they have not been identified or if family cannot be found or do not have funds (or are unwilling) to pay for burial. Some financial assistance is available. For people who were on or were eligible for public aid, Illinois Department of Human Services reimburses funeral homes or the family after the funeral, allowing $500 for burials and $1,100 for funerals. The Cook County Veterans Assistance Commission buries any honorably discharged indigent veteran, up to $600. Homewood buries indigents at a cost of $235 per body. What is impressive is that they do not just bury these people, they also memorialize them and allow mortuary school students to participate in the process. Consider these words: "We do not know the circumstances in their lives that brought them to this grave," said Kowalski, also an instructor at Worsham College of Mortuary Science. "Many may have died in poverty, others may have simply outlived their families. Our beginnings do not know our ends."

Monday, October 26, 2009

Cancer Tests for the Elderly

The Chicago Tribune had an interesting article on the conflicting advice seniors receive regarding testing for cancer. I hadn't thought much about the need or effectiveness for these tests in the elderly. In our society, it seems like we are still bent on preventing and treating illness at any cost. If that is still true, then age shouldn't matter. However, when we factor in Advance Directives, costs, and end of life issues, we may come to a different conclusion. Detecting cancer early results in more effective treatments and increased odds of remission. This is true of breast, colon, and cervical cancer when it comes to those under age 65.

On the other side are the potential costs, which can include unnecessary treatments for cancers that never would have become life-threatening, the anxiety and distress associated with cancer diagnosis, the complications associated with screening procedures or therapies, and medical expenses. Take colon cancer. Although detecting a polyp is advantageous at age 50, the benefits are less clear at 80. Typically, polyps take 10 to 15 years to become cancerous and potentially life-threatening, and often seniors will die of other ailments before it happens, said Dr. Neal Persky, a geriatrics specialist at the University of Michigan.

The argument then becomes whether one can assign an age cut off, as seniors are not "one size fits all." Some medical experts believe that if a senior is healthy and would be a good candidate for treatment, then they should take the test.

The influential U.S. Preventive Services Task Force, an independent group that rigorously evaluates preventive services, has suggested stricter standards. It favors ending screenings when evidence indicates most people of a certain age are more likely to die of another condition -- say, stroke or heart failure -- than of cancer. For colon cancer, it sets the bar at 86; for prostate cancer, 75. Older people are more likely to experience complications from the tests and less likely to reap benefits, said Dr. Ned Calonge, task force chairman.

An important question for seniors to consider is what they would do if cancer is found. If they would not pursue treatment, then there is no need for screening. If however they would want chemo, radiation, or surgery, then they should ask to be tested. Above all, a senior must advocate for their wishes either way.

Waiting Room

"Robby" came on to hospice Thursday after deciding to stop dialysis; he had started hospice in March but after a couple of days, decided he still wanted dialysis. Fast forward to August where we cared for his wife of 60 plus years for 6 days on hospice. When I saw Robby after that (while visiting another patient where he lives), his heartbreak was beyond visible. His spirit seemed broken. I was not surprised to hear that he had decided to stop dialysis once and for all. I was, however, surprised when he died this morning. The hospice RN went out to pronounce and then asked me to come and sit with the family while we waited for the funeral home to arrive. I have no problem sitting with families in the midst of their grief. The harder issue is assessing which families want to talk, either about their loved one or any other conversation topic, and which families prefer silence. It turned out this family was a combination of both. We sat in the residence living room; Robby's room was down the hall and family would go in occasionally to say their goodbyes. They shared stories about Robby, from his time in the war to his love of food- Robby was always anxious for the next mealtime. They talked about his decision to stop dialysis, one that not everyone agreed with even though he was well in to his 90s. Sometimes they would get lost in their thoughts. And I tried to be sensitive in the midst of it all. They were able to laugh and find some comfort and meaning in Robby's decision. His son, for instance, was sure that Robby held on for him and his children to arrive before he died. I have no doubt that this is true. There is such a somber note in the air after death; it tinges everyone and everything. Although I was not personally affected by this loss, I tend to take in others' grief like a sponge and eventually need to be wrung out. I ended up staying with them for about an hour and a half. When they left, they thanked me for my time with them and made plans for lunch. I think Robby would have appreciated that. I was glad to be there for them but left drained, as it always happens after such a vigil.

On a lighter note, I went to visit a patient in a group home this afternoon. The other residents are quite demented. As I visited my patient, one woman looked directly at me and distinctly said: "I don't love you...but I don't hate you." Later she was railing on about how "I am not a vegetarian!"

Wednesday, October 21, 2009


Wednesday afternoons are filled with meetings, generally something to endure. Today however I had a few bright moments. First, during the social service team meeting, the hospice director announced that we will no longer have weeknight on-call for social workers or chaplains! Apparently they finally clued in to what we had been telling them. Rarely was anyone called out on a weeknight (I was just once) and it didn't seem like the best use of our resources. We still have to cover weekends and holidays but this is such a load off of everyone. Thank you, God! Second, IDG was filled with laughter and silliness for no apparent reason. I'm sure anyone looking in would have thought we'd lost our minds but it seemed like the release we all needed to have. Third, during an ELNEC class discussion on communication skills, a point was made regarding talking to children on their level. As soon as this was brought up, the on-call RN simply pointed at me. Then she said, "Leigh, this is your area of expertise." And a palliative care RN chimed in with a similar statement; I've worked with her on a number of palliative patients who are parents, as well as our pediatric hospice patient case. It's nice to be recognized for one of my strengths. I am usually the go-to person for any patient with children or teenagers, whether as the family's social worker or as a resource for my coworkers. Working with children brings me such energy. The new bereavement coordinator wants to empower my role with an upcoming children's grief support group. It probably won't start until spring but she wants me to play a big role. Hopefully the administration will agree!

Monday, October 19, 2009

Sunday, October 18, 2009

Cindy Bullens

I was introduced to Cindy Bullen's music at the conference. She wrote the CD "Somewhere Between Heaven and Earth" a few years after the death of her 11 year old daughter. The music is beautifully moving and such an apt expression of grief. She also leads workshops, Somewhere Between Heaven and Earth: Grieving Out Loud. "A bereaved mother's story through word and song, told with heart and soul, and tears and laughter." Listen to music clips on CDBaby. Dr. Jordan played a few of the tracks off the CD to illustrate different points in her grief. The title track affected me the most, lyrics are below.

by Cindy Bullens

I curse the night
I watched you slip away
Wouldn't have done no good
To beg you to stay

You were here beside me
But now you're gone
I'm just trying hard
To carry on

But there's no rhythm in the rain
There's no magic in the moon
There's no power in this pain
Til somewhere between Heaven and Earth
I can find you again

Hearts are broken
And dreams are lost
But I made a promise to love
At any cost

Little did I know
The price was so high
Losing forever
In the blink of an eye

There's no rhythm in the rain
There's no wishes in the stars
there's no power in this pain
Til somewhere between Heaven and Earth
I can hold you again

If I could one more time
Feel your hand in mine
Hear your voice call my name
And whisper sweet good night

Then there'd be rhythm in the rain
There'd be magic in the moon
No such thing as love in vain
And somewhere between Heaven and Earth
You'd be with me again

And I could see you again
And I could hold you again, my baby
Somewhere between Heaven and Earth....
I will see you again


I got back yesterday afternoon from a two and a half day conference: Foundations of Bereavement Counseling, presented through CMI and The American Academy of Bereavement. The conference was taught by Robert Zucker and Jack Jordan, both excellent speakers. I had seen Zucker before, and even though I'd heard a lot of the material at a seminar I attended about a year ago, it served as a great review and still gave me new ideas on working with grieving children and teens. I wish I could head to Phoenix next for Advanced Bereavement Counseling but alas, I had to pay for this one myself. The conference was great overall but emotionally exhausting, as it appears most mental health related conferences also serve as therapy sessions. Of course, talking about grief just ups the ante if you have personally experienced loss. Yes, there were things that I applied to my own loss experiences but I also realized anew how empathetic I am. Tears easily welled up when other people would share their losses, whether a miscarriage, loss of a child, violent death, or losing a parent as an adult. I'll probably share some insights over time. For now I thought I'd just share a few take away phrases and let you mull them over.

In terms of society's view of death: "It's not that I object to my death; I just don't want to be there when it happens." -Woody Allen

We're on the same path as our clients when we're in this line of work. We must face our own losses and face our mortality.

Grief is like phantom limb pain.

The best gift we can give the grieving person is to recognize that we do not know what this experience means to them and to communicate that we are willing to find out and understand.

Your task when you are grieving is not to let go but to find a different way to hold on. Death ends a life but it does not end the relationship.

Monday, October 12, 2009

Hospice Documentation

The clinical director sends us copies of Home Healthcare Nurse: The Journal for the Home Care and Hospice Professional each month. The October issue had an interesting article regarding hospice documentation, specifically related to performance improvement and CoPs (Conditions of Participation.) If you or your organization subscribe to the journal, it's well worth reading. Assuming you don't have access to the article, I'll leave you with some of the highlights.

CMS started collecting data in 2007 and will launch phase 3 on January 1, 2010. Hospice providers will then be required to list visit lengths and number of visits by physicians/nurse practitioners, nurses, social workers, and aides, as well as PT, OT, and ST, and the length of phone calls made by social workers that are related to the terminal illness. It is well worth noting that complete comprehensive documentation by the interdisciplinary group (IDG) members is even more critical now that so many governmental systems are watching hospice providers. Documentation provides evidence of the care provided, verifies the quality and coordination of care, ensures continuity of care, shows compliance with various regulations and organizations, provides substantiation of the sequence of care in the court of law, and provides the basis for service reimbursement. (Ah, yes, it always comes back to money.)

Documentation should tell the patient's story in a legible, complete, and consistent way. The story begins with the initial assessment of the patient's needs, as well as the needs of the family or caregiver. IDG members should consistently and objectively document the patient's and family's/caregiver's status and the state of their environment each contact. There should be 1) a complete description of interventions provided to the patient and family or caregiver, 2) the patient's pain and symptom presentation and interventions and evaluations, 3) communication with the MD, other IDG members, and any nonhospice professionals, and 4) the observed or verbal responses to interventions and care.

Stay away from vague, inconsistent, and contradictory statements about the patient's status or clinical interventions. Avoid using these: "continues slow decline," "remains hospice appropriate," and "needs more care." Make sure the hospice team is seeing the same thing, i.e. the RN documents that the patient is ambulatory while the aide lists the patient as bedbound.

Comparative charting is a best practice method. Comparative charting contrasts the patient's present condition to their prior condition. This also individualizes the patient by looking at their specific trajectory of decline and presenting specific information instead of generalizations. Assessment of the terminal condition should be emphasized and also include any comorbidities that impact the prognosis. There should also be an individualized description of the patient's status as it relates to the terminal diagnosis. Examples can include documenting any limits to daily activities for a patient with CHF or describing the use of oxygen for a patient with COPD.

My organization is currently examining how we document and trying to streamline the process. Social workers and chaplains started using Assessment-Intervention-Plan as a guideline for our clinical notes. It was an adjustment at first to figure out how to structure the clinical note, since I was used to a free form narrative. However, now that I've been doing it for about 2 months, I love it! Each visit, I copy the old note in to the new one and tailor it to the visit I just made. It serves as a refresher for what I've been working on with that patient and helps me keep my plan of care more current. I don't know what Medicare will throw at us next but I think my organization is ready to meet the challenge.

Thursday, October 08, 2009

Palliative Care Grounds 1.9

The latest edition of Palliative Care Grounds is up at GeriPal. There's some great new bloggers to check out!


I was pleasantly surprised to open my newspaper this morning and see Bruce Conley's name on the front page. Bruce has been a long-time friend of my grandparents. We used his funeral home for my great-aunt and grandmother 2 years ago and I was blown away by his compassion and the many personal touches Conley Funeral Home added to the visitation and funeral services. I have heartily recommended Conley's to my patients ever since. No one could have ever guessed that his work would come closer to home. Bruce was diagnosed with cancer in January. The community has rallied around him. His son Ben is now primarily running the funeral home while his dad goes for chemo. The Tribune article touches on how many lives Bruce has touched as a funeral director and grief counselor. Bruce has taken the funeral industry to a new level by recognizing the role it can also play in terms of grief support. "Conley's relationship with survivors often lasted years beyond burial, continuing with birthday cards, counseling, support groups and grief programs at the Conley Farm -- pioneering one of the state's most comprehensive after-care bereavement programs." Bruce is in my thoughts and prayers. I hope that remission will be in his near future.

A 2 minute video in which Bruce shares thoughts from his journal in regards to having cancer:

Tuesday, October 06, 2009

Pediatric Hospice

I have much to write about but little time to do it. The short story is that I'm pondering a job change in the next year. Originally I thought I'd pursue a bereavement position but lately I've been thinking about pediatric hospice again. This means it's time to research. Would I be a good candidate even though I have little experience specific to pediatrics? When I look at my history as a whole (child and teen bereavement counseling for 3 years, field work placement working with pregnant and parenting teens through county health department, residential counselor for teenage delinquents, youth group leader, mentor to child with autism, etc.), I think I could be a great candidate but I've only had 2 pediatric patients while working in hospice. Any suggestions on what I could do to improve my chances or on good information regarding this field? I'd appreciate it!

Saturday, October 03, 2009

Liquid Bowel Medications

GeriPal has created a wonderful, moving video taste test of liquid bowel medications. I especially appreciate their insights as a non-medical professional working in health care. I've amassed a knowledge of commonly used medications over the years, as it is a frequent topic when I visit patients whether discussing effectiveness or cursed side effects. Oh, so many bowel-related puns to choose from, so little time. You'll laugh, you'll cry, you'll run to the bathroom.


Amongst some of the social work blogs I follow, there's been an interesting discussion regarding confidentiality and blogging. Eyes Opened Wider lays out how seriously she strives to protect identities and maintain confidentiality. I added my two cents in the comments section but thought it might be worthwhile to raise this issue here. When I first started my blog, it was meant to be a place for friends and family to read about both my personal and professional experiences. At times I wrote more about my travels and the White Sox than I wrote about work. However, in the past year this blog has developed into a professional resource-only, in response to increased traffic. It's exciting to have a bigger readership but it also means I need to double my efforts to protect my patients' identities. I've started reviewing old posts and revising here and there just to be sure. I've also taken out some personal musings that might reveal clues to where I work. I've toyed with the idea of publishing my name and workplace but I'm not ready for that yet- or maybe I just don't want to involve HR!

In any case, here are some of the ways I try to maintain confidentiality:
1. Under my blog title, it states that patient names and identifying information has been changed. This is in accordance with the great and mighty HIPAA.
2. Patient names on this blog are never close to their actual names, which is sometimes a shame because I could never make them up. Sometimes I use TV or Movie characters, random initials, or a random name.
3. I vary ages, sometimes accurate or sometimes a general "in their 70s." It depends on why I'm sharing the story.
4. I usually give an accurate diagnosis unless the diagnosis has no bearing on the story.
5. I struggle with how much to share when it comes to a patient's background or family dynamics. I find those aspects to be so compelling that I want to tell it all but I have become better over the years at picking and choosing what to share. If a patient's story is one of a kind, then I tend to change all the other information.
6. When pictures are included (i.e. Bucket List patient), permission is always requested first.

Like the other social work bloggers, I never share a story that I did not experience myself. I originally thought this blog would be a good outlet for me to process the hospice and bereavement worlds but it has grown in to something more. I am honored that someone would want to read this blog and that my clumsy words might be of use to them. I appreciate all your feedback and insights. If you ever think I am not safeguarding my patients and their families, please let me know! We could all use a good reminder once in awhile.

Any suggestions or pointers for how you protect patient identities while blogging?

Thursday, September 24, 2009

Commendable Caregivers

I saw two new patients/families today worth noting. The first patient slept for most of the visit, he has Alzheimers and the overcast skies were not encouraging him to get out of bed. I met with his daughter "J" who shared their harrowing story. J has really stepped up to the plate for her dad. She moved up from Florida last fall to take care of her dad, after he left her close to 70 messages in 2 hours repeating the same thing. She knew something was wrong and advocated for him despite a healthcare system that would not take the time to diagnose him. She advocated for him even though he tried to kick her out. She pursued guardianship even as her siblings fought about who should be in charge and spread lies about each other. In the end, her dad was diagnosed with Alzheimers, she was named guardian, and she moved her dad into an apartment he owns. Her husband travels back and forth in the meantime. All this is commendable in and of itself. However, I think J's past informs her present. You see, J's dad beat her and her siblings throughout their childhood. He was emotionally unavailable during her adulthood. And even as she takes care of him now, it is not uncommon for him to bite, kick, or try to punch her. Yet J told me she feels it is important to do this for her dad. She said she has forgiven him; she is letting the past stay in the past. She said someone needed to step up to the plate and she knew her sisters and brothers wouldn't do it. So here she is. Her life has drastically changed because of this choice but J has no regrets.

This afternoon I met with a spunky lady, her hired caregiver, and her daughter. The patient has just returned to her home after a year of hospitalizations and nursing home stays. She is so happy to be back home! Her daughter has seen a big improvement in her mom since she's been back...the power of being in one's own home. This patient is very hard of hearing and almost blind so the daughter and I talked about what we can do to bring enjoyment to her days. I'm referring her for a volunteer, pet therapy, and music therapy, plus I'll be visiting every week. I talked to the daughter for awhile about family involvement. The daughter has handled all the details of her mom's care and transition back home. One would assume that she is the POAH but she told me that her brother is the POAH, in fact. She said that he really doesn't do anything other than sign the papers; he is content to leave the details up to her. I talked to her about this and she is at peace with her role. She asked, "Isn't this what daughters do?" Daughters are overwhelmingly the primary caregiver or decision maker for their parents but I don't think statistics lessen the impact of this role. Both of these situations are complex but at the heart of the matter, these daughters are doing their best for their parent, regardless of the toll it takes on them. It's beautiful to witness.

Tuesday, September 22, 2009

Matchmaking Update

A long time ago I wrote about a Matchmaking Family that had high hopes for me and their grandson. At the time I explained to the family that I could not date him for ethical reasons. This is and was true. However, I don't think that this grandson would have been a good match for me, ethical reasons aside; I chose not to tell them this. They were very disappointed and so, never imagining that I would be in this position, I told them that if we were both single a year after Bernie's death/discharge, we could think about it. I assumed 1) I would lose touch with the family and it would not be an issue and 2) I would not be single by that time anyway, thus illustrating why one should never assume.

Bernie stabilized within a month after that post and we discharged him from our program. I loved visiting him and his wife but the business of my schedule prevented me from ever dropping in on them to say hi. We did lose touch. A few weeks ago hospice chaplain Ron thought he noticed Bernie while he was visiting a patient at a nursing home but didn't have time to investigate. This morning (while I was adjusting to being back at work after 10 glorious days off) he told me it was indeed Bernie; he ran into Bernie, Mary, and their daughter last week and was able to catch up with them. I was caught off guard when he told me that Mary had asked if I was still single and wanted Ron to let me know that their grandson was still available. She specifically told Ron that it was more than a year since Bernie had been surely it would be OK for us to date. I could not stop laughing when he told me this! I think Mary wanted Ron to call me right on the spot when they were chatting. So flattering that this family would think this highly of me. Nevertheless, I think I'll pass. It was a nice way to start the day though!

Protect Insurance Companies PSA

Monday, September 21, 2009

ADEC certification

I received official word that ADEC (Association for Death Education and Counseling) has approved me to take the Thanatology exam. You may remember that I am starting to look at transitioning to bereavement and this certification is the next step. The test will be November 7. They sent me a study guide and recommended a few tomes. As I would prefer to pass this test the first try, I started reading Death & Dying, Life & Living on the plane to and from Nashville (finally a vacation!); it's a good overview of the palliative and hospice world and appears to be a wealth of information so far. Wish me luck!

Ride to Remember

Support a good cause! Dr. Greg Gramelspacher is cycling cross-country starting September 14 in Santa Barbara and ending up in Charleston, SC 40 days later. He is trying to raise money for the Wishard Health Palliative Care team with a goal of $300,000 to remember the over 3,000 patients he and his team have cared for; this coincides with the 10th anniversary of the palliative care program. For more info regarding this endeavor, look at his colleague's write up at Pallimed. You can also follow Greg's progress and make a donation at his Ride to Remember blog. Best of luck Greg!

Thursday, September 10, 2009

Bucket List Races a Car

"Jim" is still working on his Bucket List. In July he fulfilled his dream of riding in a NASCAR race car. OK, his original dream was to drive a race car but this was a close second. Thanks to money raised by his Rotary Club and the professionals at Richard Petty Driving Experience, Jim was able to go on his ride. Richard Petty Driving Experience offers many racing opportunities but they also offer ride alongs. Jim has definitely declined since we traveled to Springfield. He is much weaker and my biggest concern was how on earth he would get in and out of a stock car.

Luckily, the Richard Petty staff stepped in, lifting him in and out, making sure he was settled safely. In the Ride-Along, Jim rode shotgun as a professional took him around the track 3 times, getting up to 160 mph. Jim described this as one of the great thrills of his life.

Unfortunately, I was not able to go, as I had a patient in crisis that day. Jim had a DVD made though and when you watch it, it feels like you're right there in the car with him! Jim is still working on his List. Currently we're trying to find a DVD that will help him improve his bridge game. It may be one of the tamer items on the list but I'm sure Jim will be glad to cross it off and move on to the next item.


In a random sequence of events, I am going to help lead a GriefShare group at church. GriefShare is a 13-week program that utilizes video seminars, as well as workbook study and discussion. I've heard good things about the program so it'll be interesting to see how people respond. Last night I went to a leader's meeting and got to see the church's vision for all of the support ministry programs. I'm excited to serve in this ministry, as well as gain some support group experience. I know there are hurting people within the church and it would be an honor to walk along side them.

Sunday, September 06, 2009

Danny's Ride

Drew Wessels was featured in my recent college alumni magazine. He recently biked across the country to raise money for The Leukemia and Lymphoma Society, an organization that's been close to my heart since I hiked the Grand Canyon with them in 2006. There was something so empowering about training for that hike and fundraising. Little did I know that my grandmother would be diagnosed with multiple myeloma a year later. The fundraising we did led to the development of one of the chemo drugs Grandma took- it boggled my mind once I figured that out! Unfortunately Grandma's cancer was detected too late and she died a month and a half later. Cancer affects all of us.

Drew's biking partner was Danny Leonard, a 69 year old two-time cancer survivor. He shares his story in the video below. Their trek ended mid-June but Drew's blog is still worth reading. They met many people impacted by Danny's story along the way and it appears they learned a lot about themselves as well. In the process, they were able to raise awareness and money to support The Leukemia and Lymphoma Society. It's no longer possible to donate directly to Danny's Ride but perhaps consider training for an event of your own. I would highly recommend any of LLS's fundraising programs, from Hike for Discovery to Team in Training.

Combat Bags

Our local magazine The Glancer featured a gift for cancer patients developed by Suzanne Dwyer. Unfortunately Dwyer does not appear to have a web site at this time so you will have to do your best with your imaginations. Dwyer's sister was diagnosed with breast cancer a year ago. She wanted to find a way to ease the stress of chemo and also encourage her sister. Suzanne looked high and low for a special gift but couldn't find anything that was quite right. So she came up with the Combat Bag, "a bag full of hope and chemo-kicking essentials that patients can carry to and from treatment." The stylish bag (20"w x 12"h x 8.5" d) has handles and a shoulder strap. It comes with a plush blanket, BPA-free water bottle, bandana, 100% natural/organic moisturizer for lips, hands, and feet, and a Combat Bag dog tag. Plus, there's room for personal items, making this bag a good bet for hospital stays or weekend getaways. The bag costs $95, plus shipping and handling. A portion of the proceeds are donated to cancer research. For more information, call 630-615-8585 or email

End-of-life Care Conversations

The Chicago Tribune highlights a discussion on DNRs in today's paper. The article looks at Gloria Hayes, a 77 year old with pancreatic cancer, her family, and palliative care team at Advocate Lutheran General Hospital. On a personal note, I met Dr. Preodor when he was the medical director for the hospice where I did my fieldwork placement; he stepped down from his position when I was a few months into it but I remember being impressed with his dedication to our patients and to further public understanding regarding end-of-life issues. Overall I thought the article was well done. The patient is very clear on what she wants. "Death is a certainty," she had said. "There's no sense in me fearing it. There's nothing I can do about it." Her family is more conflicted, hopefully illustrating the importance of these conversations ahead of time. The medical professionals clearly lay out the facts and their recommendations but also talk about abiding by whatever the patient wants.

Preodor then described cardio-pulmonary resuscitation in a way that sounded nothing like TV. A violent pounding on a fragile chest. A high probability of ending up on a ventilator in an intensive-care unit. No effect whatsoever on advanced pancreatic cancer. "It is not recommended for people with cancer," Preodor said. "My recommendation -- but it is something for you to think about."

When I first read that passage, I cringed knowing how the words might be interpreted. Unfortunately people often take TV-portrayals to be reality; the way the reporter writes, it might appear that Preodor is trying to scare the patient into signing the DNR. Of course, he is doing no such thing. The public is generally not aware of the side effects of CPR on a healthy person so why would they consider the risks to someone whose health is already compromised? I had to go through CPR certification for work a year or so ago and was surprised to learn that people often throw up while receiving CPR. I already knew that it's not uncommon for a rib to crack or break during the process. Yes, lives can be saved through CPR but it is not an easy, magical process. (At least from this social worker's perspective.) I think it is important for patients to be aware of how their condition affects the effectiveness of CPR.

The article then highlights Someone to Trust, which trains facilitators to lead advanced care planning conversations in the Chicago area. Their long-term goal is to significantly increase the number of Chicago-area residents participating in advance care planning prior to a healthcare crisis. Someone to Trust notes: "While advanced care planning (ACP) can include advance directive documents, it is also an ongoing, living conversation and decision-making process between patients, families, designated agents and medical practitioners where end-of-life medical wishes are discussed. If initiated while the individual is capable, these conversations provide needed information and give the individual time necessary to understand and interpret the information in the context of her or his own values and goals." It's important to have organizations out there that can assist people in formulating their wishes. These conversations must continue regardless of their coverage under the proposed health care plan.

Finally, yes, that is our very own healthcare blogger, Dr. David Fisher who is quoted in the article.

Friday, September 04, 2009

"Where's your husband?"

This afternoon I was visiting with a patient that can be difficult to handle at times. She's extremely labile, her emotions go all over the map in the span of 30 seconds, so it is helpful to know how to distract her and keep her in a happier place. She's also pretty confused. Today she told me that her son and daughter were deceased (they aren't) and then 5 minutes later she told me her son sent her flowers. Apparently from the grave. Then 30 minutes later she heard the caregiver cooking dinner in the kitchen and told me her son was making a racket while he organized the cabinets. I really get a kick out of visiting with her. We were partially chatting and partially watching Jeopardy when she turned to me and asked what my husband was doing. I told her that I wasn't married. Then she said, "I could have sworn you were married." I watched her ponder this information and wondered where she was going to go with this. She looked at me again, in such disbelief, and said, "But you're so pretty!"

Wednesday, September 02, 2009

Palliative Care Grounds 1.8

Welcome to the latest edition of Palliative Care Grand Rounds! I'm honored to be your hostess this month and excited to share some of my favorite death and loss blogs. I've taken some liberty in sharing blogs that aren't specifically palliative or hospice-related but still applicable to the field. Remember to follow the blogs you like and comment often- I promise it never gets old. While I was gathering my thoughts for this, I realized almost everything could be compiled as if I were doing a psychosocial assessment, incomplete though it may be. This means I am either clever or need a vacation, most likely a combination of both. In any case, enjoy!

PCGR now has subscription options; you can follow by
email or RSS feed. An aggregated feed of credible, rotating health and medicine blog carnivals is also available.


Medical History
The latest article in the New York Times series "Months to Live" has generated some interesting feedback in the blogging arena. Check out Christian Sinclair's insightful response to "Breaking the Bad News" over at Pallimed. Gail Austen, president of the American Academy of Hospice and Palliative Medicine, sent this letter to the editor noting an important distinction about palliative care.

Kristy Richardson has kidney cancer. What makes her unusual is that she apparently never had surgery or treatment. Here she is, 22 months after her diagnosis. She's not had an easy go of things, what with being denied Medicaid and Disability- from what I can tell, this is why she hasn't had surgery,etc. Cancer rant is also worth looking at.

Hospice Physician is a wonderful addition to the blogging world. It was tough deciding which posts to feature. Read "Are They Really Dying?" and "Congratulations You've Graduated Hospice."

Are you tired of asking patients to rate pain on a 0 to 10 scale? How to Cope with Pain has some thoughts on that issue.

Dr. Muriel Gillick shares her thoughts after reading a New York Times Magazine article from 1950, "Recharting Life for an Aging America." She notes that there's been a change in perspective but questions: "Is the result really that Americans today fail to accept that death is inevitable? Or do patients appear to believe that death is optional because physicians seldom discuss life’s final stage and continue to offer treatments, even if they are of little or no benefit? For all the lip service paid to informed consent and joint physician-patient decision making, older patients seldom understand their likely trajectory with and without a particular treatment."

Advance Directives
The Eldercare ABC Blog has a wealth of information regarding, you guessed it, elder care. Of note is the article on what will happen if one does not have a DNR. The author offers practical suggestions on how to let people know what your wishes are, especially once you are unable to express them yourself.

SocialWorkEmergency shares this story about a woman whose father had a poor prognosis. She was not ready to withdraw care and it seemed her father had not left Advance Directives or discussed his final wishes so the hospital had to respect her decision in the end- although some of the staff took the badgering approach.

And if you weren't already convinced that Advanced Directives are important, David Fisher, MD, MPH lays it out on the line with "The document that is more important than a living will." He writes: "
If you were to become very ill, unless someone has a copy of your living will, it may never be followed. It is much more powerful to have a living, breathing advocate (your Power of Attorney for Health Care) who understands your wishes and can help guide your doctor through the myriad of possible scenarios that can occur if and when you become ill." It's important to note that you do not need a lawyer or notary public for the form to be legal and Dr. Fisher kindly includes links so you can print off your own copies.

What if you don't think your loved one will follow your wishes? Cooking with Dee suggests that you take care of the paperwork well in advance. She shares how her sisters overrode her mother's wishes until her mom could finally and firmly tell everyone she did not want any more treatment. This has impacted how she and her husband view the eventual ends of their own lives. "
We will both do our own papers and sign DNR’s because we don’t trust each other to let the other go. I know that in my heart." The presumption is that with the paperwork in place, the spouse will indeed follow what it says- it takes the guesswork out of the process. I hope that will be true if and when they are in that position.

Wings of Madness focuses on the ins and outs of depression, offering information, news, and support. There's also a support forum for those struggling with depression. Of particular use is the article "What to Do (On and Off the Web) While You're Waiting for Your Antidepressant to Kick In." A fair amount of palliative care and hospice patients are put on antidepressants but there is sometimes a concern that there's not enough time for the medication to be effective or that it will take too long to work. This article addresses hands-on ways people can deal with depression before the medication kicks in, from music and book suggestions to ideas on self-care.

Kieran is a writer with terminal lung cancer. He opens up about his experience with therapy. I love that he says he doesn't really need to see a shrink but that he does need help in dealing with the things happening in his life. I'm of the belief that everyone could benefit from having a nonbiased listener in their life and I'm glad Kieran has found his. His mom recently died amidst some changes in his own health. He writes poignantly of his grief while laying in his hospital room.

The Naked Soul invites us to accompany him on his spiritual journey. Hardships Along Our Journey is relevant for ourselves and for the people we serve.

Family History and Dynamics
Daughter of Cancer, whose mom had glioblastoma, shared what to say and what not to say before her mom died. This particular blogger notes she is a private person and will not often share her feelings with family and friends- hence, her blog. This is what makes her openness regarding her grief so compelling. Here she talks about how she tried to disengage before her mom died and wondering what the rest of her family is feeling.

Hospice Doctor shares the story of a 20 year old patient with a rather dysfunctional family. "A couple of weeks ago, another relative who helped care for Helen told me that Helen was an angel who'd been sent to earth to fix her mom. Unable to do that, Helen had to leave...We all search for meaning as we confront the unspeakable. It occurred to me that I had no better explanation for this tragedy."

Should a well partner separate from the sick partner? An advice columnist recently gave the OK, in a post featured on In Sickness and In Health. That kind of advice gives me the willies!

The New Old Age Blog looks at the way divorce can complicate caregiving situations. Blended families can mean more elderly parents to care for but also more complicated family dynamics.

Culture and Ethnicity
The Masked AMHP works in a Community Mental Health Team in England. "Lost in Translation" discusses the need for an interpreter for a Portuguese girl who could not hear. I've heard of sticky interpretation situations but this one might take the cake!

Caregiving Needs
Nursing homes get a bad rap, which is not always justified. Unfortunately, if you've worked in the healthcare industry, you've likely experienced a bad nursing home at some point. Jonathan Rosenfeld's Nursing Home Abuse Blog holds nursing homes accountable for their care, with the goal of improving quality of care for their residents. He recommends America's Best Nursing Homes if you're trying to find a long-term care facility for your loved one.

I'm grateful that discharge planning is a very limited part of my job. Setting up caregiving or finding a bed at a nursing home that meets someone's specifications is never easy in my experience. My hat is off to the medical social worker at The Unburdening who deals with demanding families and does her best to meet their "needs" every time.

I would be remiss if I didn't take a moment to focus on family caregivers. They are the unsung heroes of end of life care. I appreciate the honesty and vulnerability found on Dying to Help. "My Mother Told Us There'd Be Days Like This" and "Hurry Up and Die" highlight the difficulty in caring for a loved one. We are ready for the burden of caregiving to end but we are never fully ready to let go.

GeriPal has a great take on family caregivers, referring to them as the Silent Long Term Care System. I should note that GeriPal is another site that has so many relevant posts, it was hard to know how to categorize them!

Resources In Use or Needed
Often patients needing palliative or hospice care are no longer able to work. They may be eligible for Social Security Disability but it's not always an easy process to apply. The Social Security Disability Blog answers just about every question one could ever have about the system.

Stop by Dream Advocate, a social work grad student who is starting her second year fieldwork placement at the Health Care for Homeless Veterans program. This might not seem like it would have obvious ties but over the years I have worked with veterans who were either homeless at some point or recently placed at a facility before coming on board with hospice. The VA does offer good assistance if one has time to navigate the paperwork and the system. I'll be interested to hear what situations Dream Advocate finds herself in and any legislation created to help our veterans. Maybe she'll give us tips on dealing with the VA! Also check out her thoughts on the book Anti-Cancer: A New Way of Life- she never posted a full review but she does share some interesting thoughts.

Coping Skills & Self-Care
I adore Carl Witten's blog "A Pastor's Cancer Diary." It was seriously difficult to figure out which posts to share and how to categorize him. "Laughter Yoga" is certainly an interesting concept. In "Resilience" he compares the effects of cancer treatment with the PTSD experienced by soldiers in combat, noting that "Cancer need not be a life-shattering experience, no more than a tour of duty in a war zone needs to be. Both experiences are difficult, even life-changing. Yet, both are survivable, psychologically speaking." "The Breadth of God" examines how a serious illness can deepen faith with a wonderful passage from Rabbi David Wolpe.

Celebrate Simple Pleasures at Being Chronically Ill is a Pill. She shares a good reminder: "When I am feeling particularly frustrated by my illnesses and like nothing works right in my entire body (pity-party anyone?) I sit myself down and focus on all the things about me that DO work."

Funeral Arrangements
Everyone Needs Therapy shares a friend's experience at his mother's funeral and offers insights on the expression of emotions at funerals. There is a difference between public and private grief/mourning; there is not one "right" way to do it. We often want to present a brave face during times of sorrow but we should also allow our friends and family to share those emotions with us. ENT is a great mental health resource and covers a variety of topics.

LCSW Mom works in hospice and as a crisis clinician in a trauma center. She shares a reflection read at her grandmother's funeral.

Ever consider holding your funeral before you died? That's just what Judi (Life as a Hospice Patient) did recently. She has a full recap here on the events. It sounds like it was a lovely celebration that captured Judi's spirit and advocated her cause.

Bereavement history
Quilting is an interesting form of memory making. It can be hard to let go of a loved one's favorite t-shirts, ties, or quirky dress. We want to hold on to the memories but we don't always have the space. Converting the clothes into a quilt of blanket can be a therapeutic exercise, creating a lovely keepsake along the way. This blogger created a quilt using her stepfather's favorite t-shirts and sweatshirts; it's touching to read about the associations with each item and the author's description of her and her mom's grief. This woman writes about wanting to make a quilt using her baby daughter's clothes and then realizing she's not ready yet.

Sarah talks about the pain of going through her mother's clothes and finding the nightgown her mom wore when she died. She plans on making a quilt for herself and her two sisters, thanks to the kindness of a woman named Sue. Read here and here to see Sarah's mental preparation/state for going through the clothes. Sarah faces infertility along with mourning her mother's death; she is very honest and candid about all that she faces, making her blog a must-read for me.

Malcolm Payne of St. Christopher's Hospice in London writes Social Care/Palliative Care, a social work at the end of life blog. I would be interested to hear what people think of Payne's thoughts on the need, or possible lack thereof, for bereavement assessments. He writes: "We in the people-working professions have defined something perfectly natural as a problem because we have sometimes come across people who have problems with it. There’s a bigger risk that we’re propagating unnecessary involvement in services than the risk people run by feeling sad when someone important dies."

Other odds and ends:
Linda Mock, a hospice RN, has set up a R.E.S.T. (Receive Enough Support Today) to acknowledge the professional stress of working in hospice. Symbolic Loss resonated particularly with me. It often seems I do not have a chance to process the loss of one patient before being presented with 3 new admits.

Social Work Blogs has links to social work blogs of all kinds- a very handy directory.

BlogCatalog has a Death and Dying category. Not all the links belong there (I saw one blog on weddings!?!?) but I found a bunch of great new resources, too.

Next month's Rounds will be hosted by GeriPal on Wednesday October 7. Be sure to check it out!